When you plate your life in the hands of a doctor, you want the most competent one that you can get.
Doctors may be very knowledgeable in their fields, but they can’t know everything about every single illness. Doctors just are sometimes not familiar with how to manage rare diseases in these situations and have to rely on what an incomplete textbook is telling them. They try to help using the tools and knowledge they have access to, but those tools can be limited.
My endocrinologist was very honest about this and told me to research my illness to the best of my ability and she would do everything in her power to answer all of my questions and help me the best she can. It is obvious that there are limitations and it is in my best interest to push the envelop and question everything.
Unfortunately, when talking about feelings and symptoms, doctors don’t always want to listen or over simplifies what you are trying to tell them. It’s not always easy to communicate and it’s even harder when the person in a position of authority doesn’t take the time to really listen to what you are telling them. In addition, many doctors feel as if they know best, and they aren’t here to take orders from the patient. Having an invisible condition can be a constant battle to be believed and understood by the world around you, including those who are supposed to be treating you.
Maybe someone in a position of authority over doctors should teach them that bedside manner matters. It has been proven that doctors who show compassion actually help you heal faster.
If you have a chronic illness or a rare disease, you really don’t have a choice. You must take your medical care into your own hands and make sure you know what your needs are. You are your best doctor.